Kalon Meraki

Impacts of a disabled child with complex medical isssues on parent /s or caregivers

A child who is depreciated, devalued by society, and due to a lack of societal acceptance in our culture can be heartbreaking over keeping a child struggling through severe intellectual and developmental disabilities.

(This article was written in response to Parlimentarty Ministers and the National Dissability Scheme for the assesment of impacts on families, what is has been expected of parents)  as a parent of a new diagnosis please read with caution

Originally children were place in institutions as giving them special care and attention was not profound. With passing time, the era has revolutionised along with new rules that had focused parents, becoming much more aware and be the ultimate support of their child.

Disabled children often have complex educational and child care needs as well as unique recreational and social needs. They may need early intervention programs for physical, developmental, and emotional rehabilitation. Specialised education programs and facilities are necessary.

They may also have complex medical needs associated with the dissability

Living with a disabled child can impart severe impacts on their entire family–parents, siblings, and extended family members as well.

Raising a child with disabilities and complex medical issues in an abled world takes a toll. Parents stood at first, suffered by the consequences of parenting their disabled child.

It’s a unique shared experience for families and can affect all aspects of family functioning. The impacts likely depend on the type of condition and severity, the physical, emotional, and financial wherewithal of the family, and the available resources. The burden incurred by parents and their families can be substantial, especially among those who had to parent a child that has severe medical issues and abnormalities.

For parents, having a disabled child may increase stress, extra tension,  take a toll on mental, physical, financial and psychological health, make it is difficult to find appropriate, effective, and affordable care for their child.

Parents spend majority of the time under pressure in stressful conditions having no time for themselves, socially isolated and affect decisions about work, hard to concentrate on issues, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem and self-actualisation. You can be gripped by fear concerning your childs future, whether you are doing enough or if you are doing the right thing doing right or not, this in itself can inpact your mental health your ability to care for other siblings let alone self care for yourself.

Initially you can feel so isolated as its quite common for your social circle to diminish, your new network becomes like-minded people.

The most emotional and heartbreaking toll lies were parents are forever advocating for their child, trying all their efforts every single day, repeating the same diagnosis and same requests over and over.

For parents, advocacy gets time-consuming as well as they are emotionally and physically exhausted with time. They lost all their hopes and dreams they once planned for their children resulting in grief and sorrow because the parenting, they expected turned into something they had never thought. With time, they get emotionally, socially, physically, mentally exhausted, and depleted.

The introduction of the National Dissability Scheme (NDIS) was meant to change many things for the disabled, their families and carers, every 12 months you are are trying to prove the existance of the dissability, forever having to justify your childs needs.

The NDIS planners are un educated within the dissability and or medical field the (TAT medical and care advice arent making advice on individual requirments, assements are made on what would ordinarily be expected of a condition, not based on co-morbidies how they impact each other and or the care requirments, not all children and diagnosis and or prognosis along wioth treatment plans are the same)

The expectation on parents can be horrific and should be assesed based on what is expected and what opportunities are availble for work etc of the every day family, and support should be allocated and asseded based on that, parents and caregivers should have the ability to work if they choose even if the child is an infant, as the every day ordinary family has the opportunity or choice to leave the infant at a child care centre from birth. The parents in these circumstances don’t have that opportunity.

Some parents develop PTSD, Anxiety as they have seen their child in traumatic, life-and-death situations. They had been with them in their painful surgeries and enervating months and years of rehabilitation. Parents of ventilated children and or tracheotomy or overnight care requirements have no peace of mind, risking their own health due to sleep loss and exhaustion.

NDIS should provide allocated support for Mental health support of parents and or caregivers, they should have a key responsibility to ensure planning covers the ability dfor parents to have self care, as burn out of parents is signifcant.

Us parents have had to fight hard for their children to involve them in daily life activities and regular based programs at schools. Helping to develop and maintain friends for your child can be difficult and heart breaking.

You can loose hope as your once plan of having  children didn’t look like this instead it resulteed  in grief and sorrow because the parenting, they expected turned into something they had never thought. With time, they get emotionally, socially, physically, mentally exhausted, and depleted.

Parents have had to suffer the taunting nature of society against their children. They may say nothing but we see the stares. Inclusion has certainly come along way, needs to come a lot further.

Parents have put their lives on hold. Parents need more offered support, financially, physically and emotionally from the beginning As a parent accepting diagnosis and your new life and the emotions that go with that can reduce depression and stress in parents with children suffering from disabilities, and Self-compassion may fuel parent resiliency. In 2014 Pediatrics study showed: Peer-led groups treat distress in parents of kids with autism. Over the last decade, studies had shown that parents of children with a range of disabilities leading to medical and psychological issues like cerebral palsy, autism, and Down syndrome have higher rates of depression and stress than other parents. This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and careers of children with disabilities. The most evident resource needs involve health care. Disabled children require not only high-quality primary care, but they often require multifaceted specialised care on a long-term basis. Ideally, children with complicated cases will have a team of specialists who work together in a multidisplinary approach.

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